Monthly Archives: May 2014

This morning as I was lying on the floor wrestling with my dog for her tennis ball–complete with fake growling on my part and some real growling on her part–I realized how important play is in my life.

Still. At the age of 45.

Since childhood, I’ve enjoyed playing board games and card games, solving puzzles and competing at (some) sports. Basically if there’s a game and I can potentially win at it, or at least enjoy trying, I’m there. But I’m also a huge fan of spontaneous, unstructured, completely pointless play.

Play in its purest form.

Play that arises in the moment and leads to unexpected, unbridled fun.

Which is probably why the assertion that autistic children don’t play “right” is so offensive to me. Why have autism researchers and therapists and clinicians forgotten the meaning of play? Worse, why are autistic kids so often described as not understanding how to play?

In reality, there is no wrong way to play. According to that bastion of knowledge known as Wikipedia, play is “a range of voluntary, intrinsically motivated activities normally associated with recreational pleasure and enjoyment.” If a child is engaging in an intrinsically motivated activity and they’re enjoying it, then they’re doing it right!

The activity could be socially-focused, like having a tea party or goal-focused like disassembling a toaster. It could be something that appears to be completely pointless like watching a bug crawl on a stick or running in circles around the perimeter of the playground or studying the way the wind blows leaves around as they fall from a tree.

Educational Play

But, the experts say, play should be educational–it should promote cognitive, social and physical development.

Kids are little sponges, absorbing knowledge every moment of the day. Filling their growing brains with new and important skills, many learned through play. But does play always have to promote a child’s development? Of course not. Much of the play that typical kids engage in is pointless fun.

But those poor autistic kids, the experts intone somberly, with their delayed development and clueless approach to socializing–they need to suck up every possible ounce of learning from every waking moment.

Thanks to this attitude–to the experts who have forgotten not only what play is supposed to be but what it’s like to be a child–autistic kids get social skills training disguised as play and developmental activities disguised as play and behavioral interventions disguised as play and occupational therapy disguised as play . . .

Except that these things aren’t play at all, because they’re not intrinsically motivated. The child is not directing the activity. The child is not choosing how to fulfill their needs or create enjoyable recreational activities. The child isn’t exploring the world around them in a way that suits them. They’re not discovering their passions and likes and dislikes.

They’re being led by an adult in a structured activity that has the goal of producing desired outcomes for which the child will receive extrinsic rewards. That’s the opposite of play. In fact, that’s the dictionary definition of work.

It’s commendable that clinicians and therapists want therapy to be fun for kids, but interventions disguised as play are a poor–if not a dangerous–substitute for actual play. Autistic kids have the same rights to a childhood as other children. Therapies and supplemental educational activities should be done in addition to playtime, not in place of it.

More Than One Way to Play

Somewhere along the line we’ve taken the notion that play is a valuable educational activity and twisted it to mean that one specific type of play is valuable and all play–especially all play engaged in by developmentally disabled children–must be educational.

This is bit like saying “doctors are valuable to society therefore all adults should be doctors.” If that were the case, we would all quickly starve and/or freeze to death because we would be homeless, hungry, and naked, among other things.

Society needs all kinds of people. It needs the kids who play house and school and tea party. And it needs the kids who take apart their toys or categorize their toys or couldn’t care less about conventional toys. It needs the kids who enjoy staring at clouds and the kids who would rather figure out the iPad by themselves than ask a parent and the kids who are content to spend their recess period digging in the dirt with a stick.

Notice that I didn’t say we need the kids who play in social ways but we also need the kids who play in other ways. I said and. This is an intentional word choice. The kids who play in goal-oriented, atypical or apparently pointless ways are equally valuable members of society. They are not the “but also” group, tacked on to the end of the sentence like second class citizens.

I was the kid who spent hours organizing her toys. I was the kid who wandered aimlessly in the woods. I was the kid playing board games alone in her room. By all accounts, I spent my entire childhood playing “wrong.” The funny thing is, nobody told me. My parents encouraged my interests, no matter how odd they were for my age. I learned to follow my passions and I learned to approach the world with curiosity.

That’s true to this day and that’s far more important to me than whether I make small talk properly. I wouldn’t trade my intrinsic motivation, my passion for self-directed learning or my love of discovery for all the social skills in the world. As a child, I intrinsically knew what I needed to learn; through play I built up the skills that have seen me through adulthood.

Because autistic children perceive the world differently, they need to learn different things through play than typical children do. All those hours I spent organizing my stamps and coins and baseball cards and Barbie clothes taught me about pattern recognition and rules–two things that I rely heavily on to navigate the world. Time spent alone in the woods taught me that quiet solitude is essential to surviving in a world that is unnaturally noisy to my senses. Hours of board games played against myself taught me about options and strategies and roleplaying and the countless ways a situation can be approached and still turn out okay.

We are born with an incredibly strong intrinsic motivation for exploring and adapting to the world around us. Forcing an autistic child to play in a certain way not only takes aways their intrinsic drive for exploration, it prevents them from discovering their strengths and finding ways to cope with the complex and often confusing world around them.

I’m low on words but after reading some of the ongoing coverage of the UCSB shootings, I made a couple of graphics:

Image description: Green text on white background that reads “Autism is:” followed by four choices that read “Not having friends, Being withdrawn, A lack of empathy and A neurological difference.” The first three phrases are struck out and the last phrase has a check mark next to it. Below the choices is the text “#autismisnotacrime”.

Image description: Green text on white background that reads “Aspergers is:” followed by four choices that read “Not having friends, Being withdrawn, A lack of empathy and A neurological difference.” The first three phrases are struck out and the last phrase has a check mark next to it. Below the choices is the text “#autismisnotacrime”.

**Because the news articles of the past two days are using the Aspergers label almost exclusively, I made graphics that use both Aspergers and autism. Feel free to share/use either or both.

In the comments on the Why Talking is Hard post, a few people mentioned that they have a tendency to repeat themselves when speaking and, oh boy, can I relate to that. I’ve spent a lot of time thinking about my tendency to say things over and over to someone, because it’s a rather embarrassing habit to have as an adult.

The underlying causes are probably a bit different for each of us, but I’ve come up with a few ideas about why autistic people are often prone to repetitive speech:

Poor inhibition

This feels like the most obvious culprit. Once we get started on a favorite subject, look out. We just can’t seem to stop, even when it’s obvious that the other person is getting bored or uncomfortable. Part of infodumping is often going over the same facts or stories repeatedly, as if we aren’t sure the other person is really grasping why this subject is so freakin’ awesome.

Poor inhibition is a component of impaired executive function–a plain old lack of ability to put the brakes on speech. Infodumping or monologuing about a special interest feels closely related to poor inhibition. Repeating the same information within an infodump is likely an extension of the phenomenon that leads to infodumping in the first place.

Basically it’s all one big case of “Help–I’m talking and I can’t stop!”

Perseveration

This is more of a “broken record” kind of repetition. It’s asking someone the same question or making the same statement over and over, even though the other person has already answered or acknowledged it.

I do this a lot to The Scientist, especially in relation to making plans.

“Let’s run tomorrow morning.”

Ten minutes later: “Tomorrow is a running day, right?”

A half hour later: “I want to run in the morning. Oh, wait, I said that already, didn’t I?”

Which doesn’t stop me from wanting to say it another ten times as the evening wears on. With practice I’m learning to silently think the question or statement and then remind myself that it’s already been answered. That works in a mostly-but-not-always kind of way.

This aspect of repetitive speech feels like lack of inhibition combined with compulsive thinking.

Catastrophizing

This is the one that eventually earns an exasperated “Would you just let it go already?!” response from whoever happens to be unlucky enough to be on the receiving end. It’s the kind of repetition that other people quickly tire of because it comes across as irrational and anxiety-laden. A worst-case scenario that just won’t die.

Normally, when I repeat myself in a perseverative way, the other person’s response temporarily quiets the need to do it again. But when I’m catastrophizing, the other person’s response is unfulfilling and I continue to say the same thing in different ways, trying to elicit a more reassuring response. Which is impossible, because no response other than “yes, that highly unlikely disaster is sure to happen” would be satisfying.

Short term memory deficit

This one occurred to me while watching the videos that I made for my attempt at video blogging. At times, I simply forget that I’ve already said something or made a point. I forget what I was talking about, have talked about or wanted to talk about and get stuck in a loop of similar thoughts that keep coming out in slightly different ways.

I also noticed that I echolalically repeat myself, reusing phrases or words within a conversation. It’s hard to say why–maybe as touchstones or because they’re caught in my conversation buffer. The funny thing is, it’s rarely the same words or phrases that get repeated from one conversation to the next.

Missing social cues

I think sometimes I repeat myself because I’m not getting the social communication cues to confirm that the other person has heard me. I need very obvious cues, like verbal affirmation. The cues that work for typical people–sustained eye contact, affirmative body language–are usually lost on me.

If I don’t get the expected verbal affirmation, I keep repeating what I said until I’m sure the other person is getting my point. Closely related to this is the difficulty I often have in actually making my point verbally. In way, my repetition is an attempt to edit my spoken words after the fact, which I don’t think is how talking is supposed to work.

Two weeks in my new town and I’m finally starting to orient myself geographically.

It takes me a good long while to get a feel for a new town or a new neighborhood or even a new Starbucks. It’ll be weeks or months before I stop asking The Scientist things like, “do I turn left here to get to the center of town?” and “which road goes to that grocery store I like?” If I’m driving alone, I rely on Waze for directions.

It’s not just my poor sense of direction that throws me off–though that’s a big part of it. It’s my difficulty with putting all of the elements together to see the big picture. In fact, The Scientist jokes about how ironic it is that I finally figured out not just the layout of our old town but all of the best shortcuts–just in time for moving away.

In the past, I knew to expect the disoriented feeling of being in a new place but I didn’t know why it happened. I think I’ve finally figured out the why, at least in part. It’s that big picture thing that autistic people are always being told we have so much trouble with. I learn a new place based on the individual parts of it that interest me most–the details–and it takes a long time to integrate those details into a functional whole that I can not only visualize but use to navigate.

Until that happens, I know where the grocery store that I like is and I know where Target is. I know that Route A takes me from my home to Target and Route B takes me from my home to the grocery store. But ask me to go from Target to the grocery store and I’m reaching for Waze. I struggle with visualizing how “home” and “Target” and “grocery store” are related to each other in the gestalt concept of “city.”

Last week was quiet around here because my dad was hospitalized on Sunday and I was away from the computer for most of the week. However, Jeannie Davide-Rivera of AspieWriter.com invited me to participate in a writer’s blog hop (and gave me a deadline!) so here I am. Jeannie is the author of a terrific memoir, Twirling Naked in the Streets and No One Noticed, which I was lucky enough to get to read as she was writing it. She also blogs on a wide variety of autism-related topics, including a series of answers to frequently asked questions that she’s recently started adding to her regular blog. Jeannie’s blog was one of the first I ever discovered and I learned a lot from reading her writing as I was exploring whether I might be autistic too. If you’re not familiar with her blog, check it out.

The Writing Process blog hop is basically (for me, at least) a chance to do a structured infodump on a life-long special interest: writing. The cool thing about this blog hop is that it’s migrated from nonautistic writers to writers on the spectrum and is now making its way through the autistic community (Mike Monje was also tagged by Jeannie and will be posting this week.).

On to the questions . . .

What am I working on?

Um, nothing? I’ve finished up the final major edits on Nerdy, Shy and Socially Inappropriate, which will be released by Jessica Kingsley Publishers in September (yay!). The book is a combination of revised bits from this blog and new material, organized thematically into a sort of “user’s guide” to life on the spectrum. I’m really happy with how it turned out and am looking forward to holding the printed book in my hands.

Technically, I should be working on a piece that I’ve been invited to submit to an anthology and some new blog posts and the next article for AWN, but writing gets a little harder with each passing week, so mostly I’m working on being kind to myself around the writing process.

I’m working on writing a lot on days that I can feel the words and the mistakes are few.

I’m working on not melting down on days when I discover that nearly every sentence I’ve written has multiple errors.

I’m working on writing without judgment, on writing and rewriting and rewriting some more.

I’m working being satisfied with what I can do, even if I don’t quite feel like I’m being as clear or as articulate or as precise as I’d like.

I’m working not being embarrassed when I write a ten word tweet and discover an hour later that two of the ten words aren’t actually there.

I’m working on letting the process take me where it does and having fewer expectations.

I’m working on relying less on words, on supporting others through showing up and being present and hoping they understand.

I’m working on not giving up hope of getting back to a place where words have feeling and shape again.

How does my work differ from others in the genre?

This is hard because there is so much diversity among autistic writers. I feel like we’re each very different in our approach and writing style and the topics we write about.

I do a lot of research and try to blend research with my personal experiences. Autism is one of my current special interests, so I enjoy digging into a topic and reading about it in depth as background for a post. In some ways that often makes my writing wonkier and more technical than the average blog. Also longer.

For last few months I’ve been enjoying interviewing other autistic women and including their stories in the articles for AWN. I was starting to get tired of writing about myself all the time so that’s been a refreshing change of pace. It’s forced me to develop a slightly different writing style, which I don’t quite feel comfortable with yet, but I’m eager to keep working at.

Why do I write what I do?

I started blogging for myself–to understand myself better. I never really expected it to go anywhere beyond being an outlet for processing my own realizations and giving me a place to infodump about what was quickly becoming a massively time consuming special interest. That people found what I was writing interesting was a happy surprise.

A few years ago, I tried to talk my way into a creative nonfiction class at the university where I was doing my economics degree. The professor asked me about my writing experience and specifically whether I’d ever written any memoir. Well, no. Needless to day, I didn’t get into the class. At the time, I couldn’t imagine what on earth I could possibly write about myself that would be of interest to anyone. I figured creative nonfiction meant the stuff I so enjoy reading in the New Yorker but the professor had other ideas and deemed me an unsuitable candidate.

Life is funny like that, I guess. I’ve always loved to write. Fiction for fun and nonfiction for work. But writing about myself–opening up my life and thoughts and experiences to strangers–was the last thing I expected to ever do. It’s been an interesting process, one that’s made me stronger and more vulnerable as a person.

Along the way, something else that’s very important to me has happened too–this has developed into a space where people feel comfortable sharing their stories too. That was something I’d hoped for in a “wildest dreams” kind of way. Hopefully, by creating a place where we can learn from each other, I can give back to the community some of what I found when I first wandered into other autistic writer’s blogs looking for clues about myself.

How does your writing process work?

New ideas nearly always originate in real life. A conversation had or overheard. An observation that raises a question. A quirky detail that I can’t quite figure out. Something I’ve read and found exciting or annoying or confusing.

Once I have the seed of an idea, I like to let it germinate in my mind. I’ll come back to it throughout the day or while I’m contemplating the meaning of life at 3 AM. Often I take tough ideas out for a run, literally. Some of my best thinking is done while running or walking the dog. Eventually the idea will take on a specific shape and that’s when I start writing.

I usually write as much as I can off the top of my head, then begin researching to fill in background, answer questions or challenge my own theories. If a topic is difficult, I might start with background reading, let the idea grow in my head a bit, then go back to more serious research. Generally, though, I like to get some fresh thoughts down before I start reading what others have to say about a subject.

I rarely start at the beginning of a post and almost never know how a piece of writing will end. Half the fun of writing is seeing where an idea will take me. If I know the ending, there’s no point in even beginning to write but there’s no sense of mystery or discovery along the way.

Finally, I revise a lot. Right now I have 23 draft posts in my Google docs folder, all in various states of revision. Some posts I’ll write in an hour and have ready to publish in a few days. Others I’ll let sit for months, going back to look at each occasionally until I find the right way of saying what I want to say. And some never see the light of day.

Up Next

Part of this blog hop deal is tagging other writers to participate. Hop on over to these blogs to check out what they’re up to and read their responses to the blog hop questions next week:

Sparrow Rose Jones is the author of “No You Don’t: Essays from an Unstrange Mind“, a terrific collection of essays about her experiences as an autistic adult. She blogs about autism and advocacy related topics at Unstrange Mind and is also a fantastic musician and has taught me a great deal about autistic culture and history.

Alyssa is a prolific blogger who writes about autism-related topics at Yes That Too. She’s been in China for the past academic year and is returning to the US soon. In addition to writing nonfiction, fiction and poetry, she’s an artist who creates cool visual patterns, which you can find at Because Patterns.

What People Are Reading

Yesterday I ventured way way way outside my comfort zone to record an interview on Autism Spectrum Radio. The host, Rob Haupt, asked some great questions and was easy to talk to. You can listen to our conversation here. Rob does a short intro and then the rest of show (about 35 minutes) is our conversation.

My friends Ibby Grace And Amy Sequenzia are editing an anthology titled “Typed Words, Loud Voices”, a collection of works by people who type to talk always or sometimes. They’re looking for essays, poems, stories or whatever form of expression you’d like to share your message in.

As some of you noticed yesterday, I’ve updated the blog theme to add a little color. Maybe down the road I’ll experiment with some of the new features (like this one that allows short “aside” posts). It’ll take some getting used to, I know.

And yes the remodeling is an indication of just how bored I am with all the not writing I’m doing.

Triathlon training is chugging along nicely – 3 weeks to go and I feel great, if a bit worn out. The garden is producing lots of cucumbers and tomatoes, a few eggplants and peppers. And for some reason I’m the only person on earth who can’t grown squash? With the exception of one green squash a couple of weeks ago, all I’m getting are tiny little squash that turn yellow and wither.

Besides a renewed obsession with The Sims, that’s about all that’s new around these parts.